Mast Cell Disorders Forum - Advice for exercise trigger?

larken

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Advice for exercise trigger?
07/15/11 at 12:25:04

Clearly one of my triggers is exercise, but it's so hard sitting around and not doing anything (especially when the Ketotifen has made me gain 10 lbs). I used to be in good shape and loved to jog. I would go almost every day.

When I developed the mast cell symptoms, I stopped jogging regularly. I recently joined a gym to ramp back up slowly with some relatively low impact exercise, like stationary bike and elliptical trainer. I take fexofenadine and ratitidine before going to the gym, but even then I develop hives afterwards, sometimes headaches or muscle aches, and end up terribly irritable, anxious, have major brain fog and difficulty concentrating. The reaction lasts for several hours and sometimes flares the next day. I have had exercise-induced anaphylaxis on two occasions, but that was only after very strenuous exercise (running for connecting flights - fun) and before I started my meds.

I feel bad complaining (after all, I choose to exercise and some days I feel fortunate to even leave the house), but this is so hard because I used to be in good shape and exercise was a feel-good thing for me, helped with stress, etc. I am naturally a bit restless, so it was my outlet. Coupled with all my dietary restrictions, it just seems like I have such an unhealthy lifestyle compared to a couple years ago.

I would love to hear from anyone who has had a similar experience. Any advice for exercise? What works for you? More/different meds? I have tried to increase time and intensity gradually, but I'm not sure it's working.

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texan1960

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Re: Advice for exercise trigger?
Reply #1 - 07/15/11 at 13:28:08

Have you tried a recumbent bike? (The one you sit in like a chair). I seem to do okay with that. I have had a bout with exercise induced hives before when I jogged while in a flare up...so gave up on that. This type of bike seems to be okay for me. Also, I would take exercise slow and take extra antihist if you feel you need to. Some people like yoga too.

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Joan

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Re: Advice for exercise trigger?
Reply #2 - 07/15/11 at 18:26:11

Hi Larken,

In case you don't know, fexofenadine takes about an hour to get up to a maximum level in your bloodstream. I think the H2 blockers take 40-60 min. to kick in. So, if you're not already doing so, you could try to take your meds at least an hour before your workout.

Some days working out is more of a problem for me than on others. I think it depends on how full my "bucket" is. But, the one factor that makes the biggest difference is heat. That was a problem at the gym, but now I work out at home and can keep it extra-cool in that room.

A super-long warm-up, taking a longer time to get up to full intensity helps me a lot. I stretch for 10-15 minutes, then walk for 5-10 min. on the treadmill, and then start slowly increasing my speed or move on to weights or stair-stepper or whatever I feel like doing.

A super-long cool down at the end of the workout helps me, too. If I think 5 minutes should be okay for a normal person, I'll slow down my exercise level over 15 minutes.

If you think you need more meds, ask your doctor how much to take before exercise. Allergists are used to this with allergy and asthma patients, so they should be able to help. They used to give my son an Intal inhaler (Cromolyn Sodium) to use before he exercised because he had exercise-induced asthma, and it worked well. I don't know whether or not they make it anymore, but maybe there's something similar that you could try.

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DeborahW, Founder

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Re: Advice for exercise trigger?
Reply #3 - 07/16/11 at 06:24:00

I am really into exercising, and I can also go into anaphylaxis from it. However, I have figured out how to do it safely. For me it is all about staying cool. So, I exercise in a very air conditioned room, sometimes even putting a portable fan next to me to blow on me. This allows me to do to cardio, such as an exercise bike. I will work out for an hour and do just fine if it is nice and cold. Other tips are to be currentg on your meds and drink water.

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sandyb

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Re: Advice for exercise trigger?
Reply #4 - 08/01/11 at 14:29:04

I used to have similar reactions. Getting on the right dose of meds is key of course but have you considered that it may be something that you are eating too close to your workout? Food is a huge trigger for me. Foods that normally dont bother me like yogurt send me right over the edge when I mix in exercise. I would "lose" whole afternoons that way. I also monitor my heartrate. If it is above a certain level then all of a sudden things get bad for me. Just take it slow and listen to your body. It may take some time for you to figure out the right combination of things to make it work for you but hang in there.

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Riverwn

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Re: Advice for exercise trigger?
Reply #5 - 08/02/11 at 15:19:53

Hi Larken,
one tip for you--when you have to fly, contact the airport ahead of time and make arrangements for boarding--FIRST, as a disabled person. You dont run for a flight--they have to hold it for you and take you to the gate by cart. Its the law and its better than going into shock Hon.. think about it. and take care of you for us!!
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Ramona

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Lisa

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Re: Advice for exercise trigger?
Reply #6 - 08/14/11 at 11:43:55

As to flying Larken, GET A WHEELCHAIR!!! This will release you from all of that walking and stress!!! This is how I travelled to Ireland and Back from Brazil 3 years ago and it helped oh so much!! I was horribly undermedicated then, but even with the wheelchair, the stress was too much and it did trigger me anyway. I have no doubts that if we didn't have the wheelchair, I would have been bound for the ER upon my arrival back home, that's how much the wheelchair saved me grief!! I also have decided that just the emotional/physical stress of flying and going through security checks and customs and the whole hassle of flying is NOT WORTH THE RISK!! I have decided that I will premedicate for the trip as though I were heading into a surgery or something!! I'm just too sensitive and don't want to ruin my trip! So, there are precautions that can and should be taken.

You know your body!! Listen to what it's saying and listen to that little doubt in the back of your head. Once we trigger, it's too late to say, Oh I should have....!!!! Thinking it out and planning it out is much wiser and may save you all kinds of grief!!!!!

Lisa

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Lisa

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Re: Advice for exercise trigger?
Reply #7 - 08/14/11 at 11:51:47

The topic here is Advice for Exercise Trigger.

Well, just to add my 2 cents.... my advice is:

BECOME A COUCH POTATOE!! Grin

Well, for those who don't have a sense of humor.... I think that this is one topic which is complicated for each of us have issues. Those patients who are not fully diagnosed or their doctors aren't up to speed or haven't adjusted their patient's meds to get back good control, exercise is a major problem. I'm one who can't. I don't know if it's that I'm just too sensitive or if my meds aren't right yet, but I can only handle a little bit. I can play with the kids of my school during recess, but even then, the 10 or 15 minutes we have of throwing the ball or running a bit is tricky. It's not always an issue of heat, but that of getting my blood stirred up instead. Even if I've had medication shortly before, I still must be very cautious and if I'm having a bad day, I can't even dare it!!

But, 6 months ago I couldn't even think of doing this, so perhaps it's just a matter of progress as to improvement with my meds. I don't know. But the only kind of "excercise" I can think of has to be something which won't make me breath heavily or break a sweat, even with the AC on. Even swimming could be complicated due to the breathing issues it causes.

So, I think that for some of us, it may never really be an option and it's just one more limitation that masto causes in our lives that we must learn to work with and even accept.

Again, I still say, Thank God it's masto and not something WORSE!! I can LIVE with being horribly allergic!!

Lisa

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Don´t forget, there is so much more to life than being sick!

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